Beats a hole in the head.

50 years of a neurological disorder

^Migraine: A genetically influenced complex neurological disorder characterized by episodes of moderate-to-severe headache, most often unilateral and generally associated with nausea, vomiting, light and sound sensitivity.

Triggered by genetic and environmental factors, marked by corticol spreading depression in the brain. CSD is a wave of electrophysiological hyperactivity followed by a wave of inhibition a phenomenon characterized by the appearance of depolarization waves of neuroglia that propagates across the brain cortex at a velocity of 1.5–9.5 mm/min. There is no cure.

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If nothing else, not calling it a bad headache is validating.

That, coupled with commiseration with other true Migraineurs online about crappy doctors, $400/pills that may or may not work (bullets are cheaper) and laughing at all the techniques and remedies we’ve tried (snorting cayenne pepper, mustard on feet, taking 6 Excedrin at once) and the well meaning ideas of those who have never had one.

Yes, we’ve had enough water.

I can get a migraine if I eat the wrong thing. But it’s not always the same thing so it’s likely coincidental. Just in case I’m off alcohols for many years, never like chocolate, watch my sugar and feel creepy about shellfish. I can get triggered if I don’t eat for sure but as I age I find eating nearly impossible if I’m not seduced by something. Is that why so many women in their 50s dream of Italy? Blood sugar dips are a no no. Sleeping too much can trigger, insomnia (my issue) always a trigger. Barometric swings a trigger. Depression feeds Migraine, and Migraine definitely feeds Depression.

When I was 8 they said it was triggered by the sun, when I was 12 they said hormonal, at 25 given birth control, made worse, given other meds in 30s, made much worse, said it was perimenopause in my 40s, given every alternative international treatment known and traditional Acupuncture helps but it’s hard to find real good docs and I move a lot, found to be allergic/sensitive to triptans which triggered anhedonia (an inability to feel pleasure) which I still have. I was promised that HRT would be the ticket, but for sure, postmenopause would mark the end of the suffering.

I’m here to say none of that is true. At 57, post menopause, they’re worse. I quit HRT a while ago as it’s expensive and I felt nothing. Different. Unpredictable, but still here. Like a bad marriage.

Some women I talk to with amazing health insurance (a rarity these days) have tried some of the most up to date pills and they say that there’s as much of a chance getting cured with that as a with a cup of ginger tea. About 50%. So people like me, the uninsured, self employed, dog rescuers, eat a lot of ginger.

When I can remember. It sucks your memory. Gives cognitive cotton head. Brain fog is child’s play. Walking through wool.

Part of me feels embarrassed by talking about my weekly episodes that last 3 days (the day before when everything is off, you can’t smell or taste and you’re irritated and your temperature regulation is jagged and your hands are numb and your eyes hurt) the day of in depths of pain and vomiting and the day after that you’re happy to be coming out of the cave but smell someone doing laundry three houses over and go back into the cycle. Like a hangover preceded by nothing.

There are people (mostly women) who have them 25 times a month! Stop complaining! Impossible to make plans, reluctant to start intimate relationships, travel that doesn’t involve me, alone, driving myself and picking the timing of all transport, hotels and feedings? Not interested. I have seen Italy, France, Spain—alone.

It’s been so long, my entire life really, that I don’t bother looking into cures anymore. I’m so grateful when I come out of my cave, and so behind on doing My Life Things that the last thing I want to do is talk about the cave, how hard the cave is, how I think I got stuck in the cave, when I got out of the cave by some miracle and how I plan on not ever falling into a cave again. And then admonishing myself why I didn’t have back up emergency electrolytes, Cola, dog food, menthol rub. Because your brain is jacked with this. So I’m talking about the cave. Leaning into the cave a little. I have Migraines and they are ruining my life!

I call it The Alligator. You’re in a swimming pool full of alligators and you’re nervous about them but you can’t get out. You learn to live with them. Okay, maybe they’re not going to eat me! Then one gets hungry and swallows you whole, head first. You struggle with pain for 18-36 hours then he spits you out.

You can’t get out of the pool though. You’ll live in the pool forever. The alligators will sleep and it’s never clear if it’s for 5 days or 17 days. So just keep it business as usual until they try to drown you. M, Kay? Good. Back to work.

Also, don’t forget to do your calming exercises to make sure you’re out of fight or flight mode says your Childhood Trauma Coach. Oh, yea. Working on it.

A lot of us feel shame about this illness that you can’t really see. About this thing that is reduced to “headache” that maybe you can take an aspirin for. We spend a lot of time when not pulling on our hair or laying on the floor in the bathroom to barf (or wretch because we’re empty) or crying or thinking about how it would be better if we were dead…we spend that off time by people pleasing, working twice as hard, cleaning, eating better whatever that means and trying to outsmart the Alligators. Like it’s our fault, this fucking genetic, environmentally triggered knife to the head and blinding full body malaise that for sure is nurtured by stress which also, creates stress.

My grandma had them and my great grandma too on my mom’s side. Back in the 1920s, no one talked about it. My dad had them but he drank a lot so everyone blamed it on alcohol. Older siblings who knew my grandparents said that Great Grandma Violet would disappear into a dark room with tea for a day but normally everyone knew her as vivacious, hardworking, funny, big lady and a great cake baker. Grandma Buhlah had a nervous breakdown in her 40s and was hospitalized. She also had migraines. She was a tiny, hard working woman who ran customer service and gift wrap at Montgomery Ward and then opened a diner with my grandpa in her 60s after retiring. We also never talked about her health and she lived to be 93. Please dust yourself off and go shovel that Minnesota snow, please. Stop whining. Yes, I see the pattern.

I think my tunnel through attitude and non ruminating short memory has not served me well. I don’t complain and I don’t ask for help and I should. This is an unacceptable way to live.

It’s not better if you don’t live alone, I’ve tried. If you live with the right person who wants to be a lifeguard in the Alligator pool, maybe and good for you. But most people aren’t cut out for the job. Then you have someone else who is tired of your shit and I found that I don’t like that being mirrored back at me. Oh, no. Again? But we had tickets! It’s just been easier to disappoint myself and a handful of dogs who want to go on leash walkies.

Mexico is sort of the worst place to have this condition. It’s loud, hot, bright, full of random and forceful smells and very few people understand or empathize so if you live here get good AC, dark curtains and double paned windows.

Literal actual medical professionals aren’t cut out for the job either. Some massage workers and acupuncturists are, but I’ve never gone to see anyone WITH a migraine. I can’t walk. Driving is out of the question. I can’t really open my eyes. I wear sunglasses and sit quietly. Or eye masks. I just hide in a room (or a hotel if on the road) with my cold/hot towel and wait for death. Then I worry about the dogs and think I should open the gates so they can run away and then I fill water bowls. I drink water or diluted electrolytes. I throw it up immediately. A random smell, your fruity laundry soap, the exhaust of a car, noise, sharp light, barking, any and all sensory issues are on 5 alarm fire mode. So there are glasses, headphones, earplugs, smelling things in my nostrils. It’s the surprise Alligator bait that catches you. Just now I walked to the corner store for dog food and the Fabuloso cleaning chemical put me right back in the cycle. I cover my nose and mouth, grab the bags and leave.

Hypoxia (lack of oxygen) kicks off that cortical depression electrical storm of the brain. And 100% why I never wore a mask for the ‘Rona hysteria. Among other reasons. I’m a known shallow breather, and you know when you’re in your zone? Like helping a dying animal or working on your favorite hobby…gardening lets say, in the sun. I was in noon day sun on Thursday helping a dog someone had sprayed with toxic poison to get rid of fleas. I could feel my short breaths so I didn’t notice the noxious smell. Someone had poured a “one drop to bucket of water lawn spray” type of poison directly on a puppy. The anger rises the heat in my head as well of course.

I collapsed when I got home. Was grateful I had finished my work for the day and took an aspirin and got into bed with a wet face mask. Too late. The facial nerve pain kicked in and I drag my right leg when I walk to the bedroom. Game over. Fuck.

I don’t take any medicines and have never found any that work. I’m not saying there aren’t some pharmacies in Mexico that have pain meds or whatever but I’m beyond experimenting with that in the desert where there is no medical care. We have a pharmacy here that I’m pretty sure is full of counterfeit goods. It’s very popular here to do low level drug swaps. It’s not all fentanyl smuggled in the back of the radio or the muffler pipes. There’s a lot of drywall mud made into Aspirina here. Everybody has a pill press. Legit everything I’ve ever gotten at the farmacia has done nothing at all or made me incredibly ill. I’m not a good canary in the coal mine for all the off brand bullshit they sell here *.

* I’ll write about that some other time when I’m far away from here so my head doesn’t end up on a lamp post. (every name’s an alias in case somebody squeals/ it’s the politics of contraband, it’s the smuggler’s blues)

I feel better writing about it and yea, complaining a little. I’ve even read about others who have drilled holes in their heads. I’ve researched a lot. Trepanning used to be a thing. Not so much any longer but I totally get it.

Migraine is debilitating and often not recognized in the medical community and they are insanely behind in research and cures. It’s all boner pills and mandated injections? I’m pretty sure Migraineurs would line your pockets, Big Pharm. Give us a chance.